The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: SL99 on December 19, 2002, 02:39:18 AM

Title: Scary Episode with my leg
Post by: SL99 on December 19, 2002, 02:39:18 AM
I am well and truly freaked out tonight as I've just had a really scary thing happen to me. I've ocassionally had the tendon in the insole of my foot go into spasm and contract on me for a few minutes which is quite painful while it lasts but not overly worrying.

Tonight though I was sitting watching TV and every tendon and ligament in my left leg went into a contracture leaving me literally screaming in pain. Right from my hip to my toes, my leg was just gripped by this intense pain....almost like someone trying to screw it off as it curled and twisted up on itself. My poor foot was so badly affected that it curled right under itself and very nearly dislocated my ankle.  :o

It lasted for about half an hour too and only eased when I took a muscle relaxant and put my heat pad under the leg. It now feels very sore from the whole event and is almost leaden when I move it. And my troublesome knee is giving me grief now as it was twisted even more out of position during the whole episode.

I'm not kidding guys, I have never experienced a pain like this and it scared the living daylights out of me...I'm unashamed to admit it reducing me to tears. Anyone have an idea what it might be or what could have caused it - and more importantly how I can avoid it happening again? Or is it just a nother quirkiness of this damned illness I have that I have to "learn to live with"?


Title: Re: Scary Episode with my leg
Post by: SL99 on December 19, 2002, 07:26:38 PM
Thanks leg is feeling a lot better than it did last night thats for sure! It just feels rather sore and beaten up today and is very heavy to move too.

I mentioned it to my physio this morning and she was rather bemused by it too but suspects it could be a sort of dystonia linked with the connective tissue disorder. She told me I need to to get it checked out though with it being so severe, widespread in the leg plus the fact it's left me with soreness and weakness.

I really don't know what it was or what caused it, but it was certainly more that a cramp or muscle spasm. My Mum is a nurse and she's never seen anything like whole leg just went into a contracture and the muscles and tendons started to shorten and twist - my toes and foot ended up bent right under my calf at one point.

Hmmm, very odd - but then that just sums me up in general at the moment!  ::)

Title: Re: Scary Episode with my leg
Post by: SL99 on December 20, 2002, 01:49:11 AM
Yep, back to old quack to puzzle, bemuse and daze him once again! I really hope that he can offer some kind of idea and advice on this as I'm hobbling around terrified it's going to happen again.

I hope to see him soon and I promise I'll let you know what happens...I just hope he doesn't take the route my vet mentioned when he first heard about my leg problems - he offered put me down!!   ::)

Hope you are doing okay today  :)

Title: Re: Scary Episode with my leg
Post by: rhea on December 20, 2002, 06:28:48 AM
Owwww!!!  Oh that sounds awful Jo!  Youch!  I hope you never have that again!  I hope you are have a better day today.

Lots of (((hugs)))

Title: Re: Scary Episode with my leg
Post by: SL99 on December 21, 2002, 02:37:54 AM
 :o Ouch!! It only went and happened again! This time it started in my knee and then really took hold of my foot making it twist to an angle that I can't actually attain voluntarily...and stayed there for an hour before finally releasing. It's now feeling really sore and I'm having trouble moving my foot properly because of the stress the ligaments have been under.

I managed to see a GP this afternoon, but sadly none of them have any real knowledge of EDS etc so I'm none the wiser. He did give me some muscle relaxants to take if it gets really bad, but I'm loathed to take the tablets as they knock me out and leave me zonked afterwards.

I'm just at a loss as to what is going on yet again now..all I can do is mention it to my OS at the next appointment ( New Years Eve) and hope that she may be able to shed some light on it or at least send me to someone who can.

Anyway, I hope everyone is doing okay....sorry I haven't replied to people but I'm just so worn out with the pain in my leg that I can't really concentrate enough to do justice to a proper email. I promise to get in touch tomorrow though, so you don't escape that easily!  ;)

With love and virtual hugs to all,

Title: Re: Scary Episode with my leg
Post by: SL99 on December 30, 2002, 02:27:31 AM
Gee this is really freaking me out now - not only is my leg continuing to do it's scary, twisting routine but this morning my left arm decided to join in the fun too. The trouble is that it's still in plaster so it was even more painful as it tried to curl up againt the cast. My fingers just twisted into tight, knarled bundles and dug into my hand and top of the cast...

They were stuck fast like that for about 20 minutes and just touching them was agony as it set of like electric pulses up my whole arm, the same as happens with my leg. Really weird....

I've also noticed that the occassional shaking I get in arms and legs is getting worse too.

I just hope that my OS has some clue as to what it's all about on Tuesday as I'm really starting to get a bit scared now.

Take care all......Jo
Title: Re: Scary Episode with my leg
Post by: Rich_NYC on December 30, 2002, 07:07:54 AM
Ouch, sounds bad :(  I have had problems with cramps and muscle spasms all my life.  My doctors have tended to ignore the problem ???  It isn't fun watching your leg or foot curl up into positions they were never intended to get into. Good luck Jo.
Title: Re: Scary Episode with my leg
Post by: Shazinoz on December 30, 2002, 03:46:27 PM
Oh No Jo,
Not again, I feel for you so much, that must have been pure AGONY, I sure hope that the doc's can work something out for you, maybe a Neurologist or someone like that could help (blood tests would help to rule out what M suggested ane other stuff too).
Anti-Convulsant medication may help (they did help me) and don't tend to make you all dopey and spacy like muscle relaxers can ( I take 600mg Neurontin a day as well as 0.5mg Rivotril (clonazepam) a day, and although they havent stopped all of my cramps, spasms, twitches, tics, flutters (facicuations sp?), tremors and more it helps helped to make them less severe and occur less often (my tics were getting so mad , people were asking me if I had Tourettes   :o ) and generally helped with some of the pain too and other benifits too.
Good luck with you OS visit On Tuesday (I think it was tuesday) and I sure hope they can think of something to help you, even trying something has to be better than this.
Bye the way you said the muscle relaxers make you very dopey, have you tried cutting the tablets (or what ever) into 1/2's or even 1/4's and then taking less but more often (ie. if you are supposed to take 1 tablet every 2 hrs instead take 1/2 a tablet every hour or 1/4 tablet every 1/2 hr) I know this will make your medication routine more involved and harder but I have found that with some medications I have had a similar responce to this has helped as it seem like I somehow get to much at once and spreding it out 1 makes it last the time it is supposed to and 2 doesn't seem to make me so dopey etc but still helps to do the trick of what the meds are supposed to do.

Hope this helps Jo.
Don't be too scared PLEASE, I know this is a HUGE, GIMORMOUS ask but I have found that stress and emotional upset can trigger my spasms and other such (insert above list :) ) or make them worse.
Title: Re: Scary Episode with my leg
Post by: SL99 on December 30, 2002, 03:55:34 PM
Thank you so much for your support guys. :)

My body seems to be behaving itself so far today, just feeling a little sore and bruised almost. But I'm completely zonked from the drugs they've given me though even though I'm taking minimum doses. I tend to get an exaggerated effect from meds due to my lack of height and weight so I'm wondering around like something out of the night of the living dead right now!  

Thanks again for your support, it makes me feel a little less fraidy cat! I'll keep you posted with what happens (if anything) tomorrow.


P.S. I promise to try not to get too scared Shaz - thanks for the advice and support!  :)
Title: Re: Scary Episode with my leg
Post by: Helen_uk on December 30, 2002, 06:41:34 PM
Hey Jo
Sorry not been on here for a while and I hope the muscle spasms have setteled down I get them in bed at night and I take nabilone canabis in any other words but as a pill it really relaxs things and stops it happeneing.
Take care
Love H xxx ;)
Title: Re: Scary Episode with my leg
Post by: SL99 on January 01, 2003, 03:08:10 PM
Well, I have good news and bad news.... :-/

The good news is I'm finally out of my plaster cast!!  ;D

The bad news is that I'm no closer to knowing what's happening with the spasms and I've lost what little shred of faith I still had in my OS during the 4 hours of being messed about i endured yesterday.

I had to sit for over an hour to start with as the OS wasn't there, then when I was called round to see someone else, I had to explian that I was there about my thumb not my knee and give a history about what had happened as there was no mention of it my notes!

I eventually got sent to have the cast removed and have an xray - another hours wait and at long last got back in to see my OS about 3 hours after my original appointment. Unfortunately although she had specially set up this consultation for me to check out my thumb....she had forgotten and had no idea why I was there. And of course there are no notes either, so again I had to recap on what had happened. She'd even forgot that she is due to operate on my hand in February!!  :o

I got no chance to ask about the operation or any other questions I needed to ask as she never gives you opportunity to talk. She tod me to be careful with the thumb and we'll go ahead with the fusion she thinks....not that I have any details other than it's provisionally the 13th Feb. I'm really no wiser!

I told her about the spasms and she just told me it was becasue I don't eat properly - they have got it into there head that becasue I'm skinny and can't keep muscle tone or weight on ( due to EDS!) that I must be anorexic. The amount of times they've insulted me with that suggestion I've lost count of...truth is I can eat for England!! I can't help it if the condition I have means I don't bulk up very well - I never have.

She agreed to run some blood tests though to check my electrolytes etc...but I'll probably never get the results as things have a habit of "disappearing" in my notes... >:(

She hasn't done any of the things that she promised she would at my last apppointment either - including contacting other knee surgeons for me to look at another opinion for my leg. It's now over 3 years since things started getting really bad with my legs, and I'm getting tired of being messed around and pushed from pillar to post but not making any progress - in fact I've actually gone backwards in the past year.

So new year, new beginnings. I've decided to take the bull by the horns and I'm planning to see my GP with the view of finding a second opinion myself ( with thanks to people on here who have helped greatly in that department!)

I odn't know whether it will be successful, only time will tell I suppose, but the way I look at it is I have ot try something and at this point in time I have very little left to loose and all to gain.

Sorry for the long wonded rant, but I'm just so angry with the way thing have ( or haven't) developed and the way I and my family have been treat. Thanks for listening and for helping me get through what has been a really tough few months.

Hope you are all okay and here's to 2003  :)


P.S. Much thanks to Helen and Lucy who managed to put a smile back on my face in time to see in the New Year last night! I owe you big time.  :) xx
Title: Re: Scary Episode with my leg
Post by: SL99 on January 02, 2003, 01:48:39 AM
Thanks M, I've calmed down a little now...well there's not so much steam coming form my ears anyway! ;)

I'm planning to start the ball rolling regarding thes econd opinion for my leg as soon as possible - so fingers crossed that it works out.

As to getting a final diagnosis, so far all I have is that the geneticist is 100% it's either EDS or Marfan, more probably EDS due to my short stature. I'm waiting on tests and referals ( echo and skin biopsy reviews, opthalmologist consult and a tilt test for blood pressure) before I'll get to know for certain though.

Hee-Hee, yep I know the hiking the trousers up with a belt feeling! Most people think it's great being so "petite" and not putting on weight but it can be a nightmare - buying clothes can be a nightmare! All the adult sizes bury me and childrens sizes are too short for my long legs and arms!  :-/

Oh the joys of being an oddbod!!  ;)

Title: Re: Scary Episode with my leg
Post by: SL99 on January 19, 2003, 02:04:10 AM
Well this peculiar saga with my spasms just seems to get weirder and weirder! Earlier this evening, I felt the beginnings of a contracture in my foot, so decided to take the meds my doctor prescribed to try and control it before it got out of hand.

Now every other time I've taken this drug it's knocked me flat out, so I was prepared to be zombified within a few minutes as usual. Just to keep me on my toes though it seems I've had a bit of a reaction to it this time and have been absolutely high as a kite, off my head for the past two hours!! Crazy...I'm tripping on a muscle relaxant!  :o

Gee, these crazy bodies of ours really do amaze me somedays.... ::)

Talk again as soon as I come down off the ceiling! :P

Title: Re: Scary Episode with my leg
Post by: SL99 on January 20, 2003, 09:01:50 PM
Thanks M, I've finally come back down to earth but whoa was that a freaky sensation! Although I have to admit that it was kind of fun for a while there... ;)

Sorry to hear about your tooth abcess, hope it's soon sorted out. I've had problems with my teeth from the classic overcrowding found in Marfan/EDS and had to have a lot of teeth removed and wear complex braces which gave problems of their own for a long time. My teeth are still a bit crooked from the lack of room and high palate though.

Inspite of excellent dental hygiene, I have very sensetive gums too, that bleed easily and are prone to ulcers and sores, which is why the braces were such a hassle for me. One of them actually caused a hole in my gum almost through to the skin.  :o

Anyway, hope everyone else have nice shiny, healthy toosies!  ;) Take care and good luck with the abscess M.

Title: Re: Scary Episode with my leg
Post by: Juliet_B on February 03, 2003, 03:50:26 AM
Those spasms on the arch of the foot happen to me a lot when I'm swimming. All you have to do to fix them is take a slow, deep, breath. As you exhale, gently coax your big toe backward, as if you are flexing your foot, or standing up on your toes. Then, move your foot around a little to get the blood flowing. If this happens again, you don't have to just wait for it to go away, you can fix it. If it happens to your entire leg again, make sure to drink lots of water afterward (same concept as in after getting a massage).
Title: Re: Scary Episode with my leg
Post by: SL99 on February 03, 2003, 05:10:12 PM
Hi Juliet,

Thanks for the advice regarding the spasms, it's much apprecaited - although sadly this kind of thing doesn't work for me as I'm completely unable to move any of my contracted body parts. :'(

I'm still having tests, but it seems like I have a widespread psuedodystonia from my connective tissue disorder which causes my ligamnets and muscles to tremor and contract violently. The other night I looked like I had Tetanus as I was pinned to the bed by rigid mucles and shockwaves of electric shock types spasm - pretty freaky and scary!  :o

And wouldn't you just know it, the new pain meds I've been put on actually make it worse - talk about a rock adn a hard place!!  ::)

Thanks again for your advice Juliet, and I hope that your own spasms aren't causing you too much problems. Welcome to the board adn I look forwrad to talking to you some more in the future. Feel free to IM me if you ever want a natter.  :)

With love.....Jo
Title: Re: Scary Episode with my leg
Post by: SL99 on February 03, 2003, 09:24:38 PM
That's the weird thing, there doesn't seem to be any particular trigger to them - although as I've said the Celebrex has made them worse. I get twinges and tremors all through the day and the really big contracture can fire off at any time.  :-/

I guess I just get odder all the time! For instance I went for a blood pressure test today as they suspected me of having postural hypotension...but found that instead of dropping my blood pressure actually shot up! Seems that I may have a rare situation where the blood pressure fluctuates erratically.  ::)

Trust me not to do things by the book!!